Abigail the providence and theratogs

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Hi Abigail, nice to hear from you again.. We only wear the providence at night,

that is when it does its work. He usually wears it 10-11 hours also. My Ortho

didn´t want x-rays right after the fit either, he never has. He usually does a

real good overview of the brace and checks it out with the surgean, and if they

are both happy they tell me to wait 6-8 months for the next appointment and that

is when they want to see the x-rays. They say the Providence starts doing its

work on the rotation after 1 year, I believe its because the back starts molding

into the areas of the brace that are open to help move the back into a staighter

position, confusing and not explaining it well sorry....Have you taken Nadia

swimming, all the docs agree that swimming is by far the best exercise for

scoliosis. Santi will start going 2X a week in private classes so that he the

instructor can work with what he really needs, his left side and his hypotonia.

I have heard

of the schroth method, I remember asking people about it and it sounds great, I

am going to research it again and take it to my PT, she is young and motivated

to try new things, maybe I can convince her...BTW have you ever thought of

checking out the spina bifida association for having Nadia´s PT done? I am

asking because that is where I am getting Santi treated, and they are a great

team, seen lots and lots of different cases, not only with Spina Bifida, but all

kinds of muscular problems.. Santi doesn´t have SB, but they treat anyone, and

also they are much cheaper then my other private PT´s. Could be something to

check into, I know a good PT is essential, and especially one that has worked

with scoliosis in children. Theratogs are a type of styrong velcro bands that

you can place on stategic parts of the body that need to have some

re-enforcement. They work well with children that are immobile, weak, or

congenital deformaties that can help be

staightened out with these bands. My mom uses them on her legs for her MS, she

is weak and they help support her legs better. Santi now is too strong for them

to do much work, I think littler children or more hypotonic children would

benefit from them a great deal, but to help the scoliosis or lordosis, it didn´t

seem to make much improvement. I think Theratogs are the first of their kind

and hopefully more companies will come out with them and lower the prices and

make them more available to people outside the USA. If you find a PT that works

with them, let them try them first on Nadia and see if they will work, don´t buy

them directly without trying. You might be surprised, many people are pleased

with them. Well, that is about it for now, I hope Nadia is doing well and

give her a big hug from Santi..

Re: Latest on Santi, providence brace, theratogs

That is such great news about Santi! Thank you so much for sharing. I am so

happy for you.

Nadia is wearing her Providence brace without too much complaint. We are trying

to keep her in it between 11-12 hours (she sleeps about 10-11 hours at night).

Is that the right amount of time- I haven't been able to get a clear answer. How

long do you all keep the brace on per day?

Anyway, our doc has not taken an in-brace x-ray. He doesn't seem to care where

it is holding her. Can't quite figure that one out. But the orthotists seem to

think she looks right in it. And I don't think there is any way we could get it

much tighter anyway.

The one thing the ortho doc really wanted for Nadia is aggressive PT. He was

super concerned about how stiff she was and atrophied- from being in a cast for

22 months. For the last month we have been going 2x per week and then practicing

on the days off. I think we are getting promoted to must 1x per week as she is

getting much more flexible and strong. Sounds as ifthe PT has the same goal as

what you are describing, , a lot of reaches and stretches.

I was wondering, what are theratogs?

Is there PT particularly designed for scoliosis? I saw something about Schroth-

but are the american PTs trained in it? Is there anything we could have access

to?

Also as a potentially interesting aside. My 8-month old was diagnosed by our

ortho doc with some lumbar kyphosis, which we are addressing with PT and a

neoprene belt he is supposed to wear around his torso 2 hours per day. The ortho

did not see scoliosis luckily. He thinks the kyphosis may be due to my son being

such a huge, lumbering kid and his tone being on the lower end of the spectrum-

he kind of slouches when he sits after a while. Over the last month the ortho

says though that he has already seen some improvement.

That's the latest. Take care, Abigail

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